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Thank you all for your support........

Average Number of Paralytic Attacks Per Year?

Hello All,

Yesterday I received an email from a registered nurse researching some things about Periodic Paralysis. She had a question for which she could not find an answer anywhere.

This was her question:

Is there is an average number of attacks that patients with periodic paralysis experience per year?

This is my answer:

Thank you for contacting me. I am curious as to what context you are going to use this information??

You will not find this information anywhere that I know, because there is no such thing as an average number of attacks that someone with Periodic Paralysis has in a year. This is due to many factors, but the main three are that there are several different forms of Periodic Paralysis and within each of these forms, the symptoms and paralytic episodes can be very different for each person, even members in the same family. The second is because the causes behind the symptoms and paralytic attacks, which are called triggers, cause different symptoms and different types of paralytic episodes. The third factor that makes a difference is how well the symptoms and paralytic episodes are controlled. Everyone is different and many things can and do change over time for each person.

The episodes or attacks of paralysis are also very different. They may be full-body, which includes inability to move at all (eyes shut, no ability to speak, heart arrhythmia, blood pressure fluctuation, heart rate fluctuation, breathing issues…including cessation of breathing, low oxygen, choking and the possibility of death). The person can always hear what is going on, despite looking asleep or unconscious. The episodes can be any variation from this down to one leg or arm going numb or only the left side being affected, etc. They can also be flaccid or be total constriction of the muscles causing great pain. There may be ataxia or headaches, cramping or vision issues and more. Periodic Paralysis is more than periods of paralysis. These episodes may last for hours or days or may only last for a few minutes.

Triggers include drugs of any kind…including IVs, anesthesia, insulin, antibiotics, hormones, adrenaline/epinephrine, contrast dyes, anything over-the-counter…exercise, rest after exercise, exertion, stress…good and bad…weather changes, cold and heat, dehydration, menstrual cycle, foods, food additives, food coloring, processed foods, salt, sugar, gluten, carbohydrates, sleep…all stages…infections, influenza and much more.

If someone has discovered their triggers and then avoids them, and is following a p/H balanced diet and is managing their symptoms they may not have any episodes at all, unless occasionally they may accidentally get introduced to something else that may cause an episode. Some may continue to have episodes, despite doing everything correctly.

Some may never have an episode of any type, but instead have gradual permanent progressive muscle weakness PMW. Most all of us develop permanent progressive muscle weakness over our lifetime, especially those who were not diagnosed and treated in a timely manner.

To explain further, I will use myself as an example. Before I had a diagnosis, when my episodes became full-body, as described above, they became very severe lasting hours at a time. This happened four or five time a day and most of the time I was sleeping at night. This went on for months and months and no doctors understood what was happening or how to help me. We (my husband and I) finally figured out what I had and how I could help myself. All drugs were stopped, I got oxygen therapy, my husband began to feed me a p/H balanced diet, we discovered my triggers and avoided them. After a few months my episodes decreased to one or two a month, which were much less severe and shorter in duration. Several years later, I now have episodes only one or two every few months, however, permanent muscle weakness has nearly totally debilitated me. I am unable to do much more than sit in a recliner all day and must use a power wheelchair.

Over my first forty years or so, I had medical issues beginning as a child, all things easily explained away as other things, that I did not realize were partial paralytic episodes. Years of testing and wrong and unneeded drugs and medications due to wrong diagnoses changed/covered my symptoms and harmed me. It took over fifty years before I finally got my diagnosis of Andersen-Tawil Syndrome.

The average time it takes to get a diagnosis for Periodic Paralysis is twenty years. A great deal of damage can and is done during that time to the organs in the body, especially when misdiagnosed and improper drugs and medications are prescribed.

So, as you can see, there is no way to answer your question with a number. We are all different and our episodes are very different.

If you would like to know more please feel free to contact me.

I hope this is helpful.

Sincerely,

Susan Q. Knittle-Hunter

Managing Director

Periodic Paralysis Network

Until later…

Normokalemic Periodic Paralysis Update

Hello All,

I have put together a list of articles, etc proving the existence of Normokalemic Periodic Paralysis....This may be used if you have doubting doctors...

You can make copies of the articles and put them in your medical file and other medical records to share with your doctors....

There is a form of Normokalemic PP...found by Dr Lehman-Horn...a real genetic mutation...CACNAIC.

It also happens in Andersen-Tawil Syndrome, Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis.

Newest studies indicate that potassium does not have to shift at all to create the symptoms/paralysis.

The information is below:

Normokalemic Periodic Paralysis

Blog Article:

http://livingwithperiodicparalysis.blogspot.com/2014/02/what-is-normokalemic-periodic-paralysis.html

Articles:

Normal Potassium levels with PP:

Interesting information about Normokalemic Periodic Paralysis from the MDA in England.....Very very important to read and pass along to the doctors who are questioning those whose potassium remains in normal levels while having PP symptoms and paralysis......

”Normokalaemic periodic paralysis: In these attacks the blood potassium remains normal

In fact, it has recently been discovered that it is not the change in the blood potassium level that is the primary problem in periodic paralysis. The primary problem in all of these conditions is that the normal pores which exist in the walls of the muscle cells don’t work properly. It does seem that changes in blood potassium levels can further hinder the function of these pores and that is why changes in blood potassium can be relevant. However, other factors separate from blood potassium can also worsen the function of the pores, so a change in blood potassium is not essential." http://www.musculardystrophyuk.org/app/uploads/2015/02/periodic-paralyses.pdf

Link for PP Labs: Normokalemic Periodic Paralysis

While researching something else today, I came across this and thought I should share it. Perhaps it can answer some of your questions about lab results and how they relate to our different forms of PP..

Hypokalemic Periodic Paralysis:

"Serum potassium level decreases during attacks but not necessarily below normal." "Creatine phosphokinase (CPK) level rises during attacks."

Hyperkalemic Periodic Paralysis:

"Serum potassium level may increase to as high as 5-6 mEq/L. Sometimes, it may be at the upper limit of normal, and it seldom reaches cardiotoxic levels. Serum sodium level may fall as potassium level rises."

http://emedicine.medscape.com/article/1171678-workup

https://rarediseases.info.nih.gov/gard/4009/normokalemic-periodic-paralysis/resources/1

http://www.ncbi.nlm.nih.gov/pubmed/1438924

http://omim.org/entry/170600

“Also of note is that potassium levels do not have to range outside of normal limits to cause serious, even life-threatening paralysis. These diseases are not the same as having a very low level of potassium (hypokalemia) or high potassium (hyperkalemia) and must not be treated as such. The total body store of potassium is usually normal; it is just in the wrong place.”

https://en.wikipedia.org/wiki/Periodic_paralysis

Andersen-Tawil Syndrome:

Paralysis/symptoms while potassium is in normal ranges:

”Attack frequency, duration and severity are variable between and within affected individuals and may not correlate with ictal serum K levels, which may be reduced, normal or elevated.”

http://brain.oxfordjournals.org/content/129/1/8

Genetic mutation for Normokalemic Periodic Paralysis:

New information has been published to relate mutations on the CACNAIC gene, also known as Cav1.1, is the first calcium channel related to Normokalemic Periodic Paralysis.

According to Lehman-Horn F. et al, “This study shows for the first time that functional characterization of omega pore currents is possible using a cultured cell line expressing mutant Ca(v)1.1 channels. Likewise, it is the first calcium channel mutation for complicated normokalaemic periodic paralysis.”

http://www.ncbi.nlm.nih.gov/pubmed/24240197/

Added July 19, 2016:

This is about normal EMG's and info from article about Electrodiagnostic Evaluation of Myopathies with comment that, "EDS studies may be normal in selected muscle diseases"... in which the author includes endocrine myopathies. Important to note that MDA refers to PP as 'endocrine metabolic myopathy' in their  2011 Quest Magazine.

Electrodiagnostic Evaluation of Myopathies Sabrina Paganoni, MD, PhDa, *, Anthony Amato, MDb

"EDX studies may be normal in selected muscle diseases (certain endocrine, metabolic, congenital, and mitochondrial myopathies). Thus, in the appropriate clinical context, normal EDX studies do not necessarily rule out the presence of a myopathy. EDX studies are most useful to diagnose a myopathy when further data are needed to exclude alternative diagnoses, confirm the presence of a muscle disease, and narrow down the differential. "

http://www.myositis.org/storage/documents/General_Research/diagnosis_of_myopathies.pdf


Added 10/09/2016:"
In Today's Mailbox: 1963 Normokalemic Periodic Paralysis and NOT part of the nervous system?? Here is one to share with the unbelieving doctors....
http://jamanetwork.com/journals/jamaneurology/article-abstract/564501


Added 1/22/2017:
INTERESTING and VALUABLE info to use when told, "Can't be PP because potassium is normal. Or ECG normal. Or PP not life-threatening. (From Maureen...thanks!)


THE FOLLOWING STATEMENTS ABOUT POTASSIUM LEVELS DURING EPISODES AND THAT POTASSIUM DEPLETION MAY NOT BE FUNDAMENTAL DISORDER (cause) AND ECG's BEING NORMAL DURING ATTACKS AND THAT PP CAN CAUSE DEATH ARE FROM THE FOLLOWING ARTICLE THAT INCLUDED REVIEW and SUMMARY OF DATA OF 400 CASES of PP and A STUDY of 33 individuals during episodes that occurred naturally and 4-6 individuals who had episodes induced...


" It seems probable, therefore, that periodic paralysis as described in the literature is produced by more than one mechanism or that the serum potassium depletion is not the fundamental disorder." Talbot 1941


"we observed no striking hypopotassemia during attacks in the patients whom we studied in detail."


"Occasional instances of paralysis without depression of serum potassium levels have been reported" (7).


"DURING episodes of mild and severe paralysis we have obtained repeated serum samples which have been analyzed for sodium, potassium, and magnesium, as well as a number of other substances. All of these values have been consistently normal."


"We have observed no values below 3.5 meq./L except in association with the glucose-insulin infusions."


"Electrocardiograms taken during the attacks showed no change from the control tracings."


"Again, the paralysis may be so extreme in some cases as to cause death". (13, 14).



https://www.jci.org/articl…/view/102465/version/1/pdf/render


Downloaded from
http://www.jci.org
https://doi.org/10.1172/ JCI102465


EXCERPTS FROM:
STUDIES IN DISORDERS OF MUSCLE. VII. CLINICAL MANIFESTATIONS AND INHERITANCE OF A TYPE OF PERIODIC PARALYSIS WITHOUT HYPOPOTASSEMIA 1 By FRANK H. TYLER, F. E. STEPHENS, F. D. GUNN, AND G. T. PERKOFF (From the Laboratory for the Study of Hereditary and Metabolic Disorders, the Departments of Medicine and Pathology, and the Division of Biology, University of Utah, Salt Lake City, Utah) (Submitted for publication December 13, 1950; accepted, March 12, 1951)


In 1941 Talbot(6) summarized the data concerning more than 400 cases of periodic paralysis. The disorder has been usually referred to as familial or family periodic paralysis. It seems best to us as it did to Talbot to call the disease periodic paralysis, specifying the hereditary nature of the disorder when it is genetically determined, and referring to the other cases as sporadic, associated with thyrotoxicosis or in other ways specifying the mechanism involved where it is known.


Talbot concluded that the syndrome probably represented a clinical entity due to a single metabolic dysfunction. In our study of a kindred in which 33 individuals with clinically typical periodic paralysis were known to have occurred, we observed no striking hypopotassemia during attacks in the patients whom we studied in detail. This led us to undertake a critical review of the data dealing with this disorder in the literature. A poor correlation between the onset and the severity of the attacks and the magnitude of the depression of serum potassium values has been noted and commented upon by several authors, including Talbot (6). Occasional instances of paralysis without depression of serum potassium levels have been reported (7).


Furthermore, the levels of serum potassium found during attacks in patients with periodic paralysis usually have not been as low as those observed in patients who do not carry this genetic trait but who have hypotassemic paralysis resulting from better understood metabolic abnormalities (3, 6, 8, 9). A corollary observation is the apparent lack of specificity of potassium in relieving or preventing the paralysis in certain patients with periodic paralysis in contrast to its excellent effect in the other metabolic hypokaliemias (1, 6, 10, 11). It seems probable, therefore, that periodic paralysis as described in the literature is produced by more than one mechanism or that the serum potassium depletion is not the fundamental disorder.


MORE excerpted from this article:
"Talbot concluded that the syndrome probably represented a clinical entity due to a single metabolic dysfunction...It was also postulated that the defect is related to the central nervous system, to the permeability of muscle cells, to hepatic or muscular glycogenesis or to a chronic deficit of potassium in the muscle." (10, 28)



https://www.jci.org/articl…/view/102465/version/1/pdf/render





Until later...

Periodic Paralysis World Awareness Day February 7, 2016

https://www.facebook.com/PPAwarenessDay

Hello All,

The "Periodic Paralysis World Awareness Day" Page has been created by the Periodic Paralysis Network to help bring awareness about this little known rare medical disorder to the world. We have chosen February 7 as "Periodic Paralysis World Awareness Day" because it is the day I finally received my diagnosis after more than 50 years!! What a better day to use in order to bring awareness about this disorder and to make sure that others do not have to wait over 50 years for a diagnosis and the help they need? Research indicates that it takes an average of 20 years to get a diagnosis for Periodic Paralysis in today's world. This has to stop!!! More awareness and education is needed around the world about this disabling and sometimes fatal disease.

Our "Periodic Paralysis World Awareness Day" theme this year is "What Is Periodic Paralysis?" We are starting our campaign with an informational poster. We will continue to share information, ideas and more from now through February 7, 2016, which is our third "Periodic Paralysis World Awareness Day" in order to bring awareness to this rare medical condition.

Please join us!!

Susan Q. Knittle-Hunter

Managing Director
Periodic Paralysis NetworkThe Periodic Paralysis Network Forum

Website: 

www.periodicparalysisnetwork.com

Email: 

periodicparalysisnetwork@gmail.com

Blog: 

http://livingwithperiodicparalysis.blogspot.com/
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"A Bill Of Rights For Periodic Paralysis Patients"
Purchase through Amazon and our Website: http://www.periodicparalysisnetwork.com/books.htm

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Video about Periodic Paralysis: /https://www.youtube.com/watch?v=YSRVOkdFRQc

Periodic Paralysis World Awareness Day Page:

https://www.facebook.com/PPAwarenessDay

Periodic Paralysis And Co-existing Medical Conditions

Hello All,

Most of us have been diagnosed with medical conditions, which co-exist with our Periodic Paralysis. There is a good reason for this. Research shows that metabolic disorders (PP is a mineral metabolic disorder) cause damage to the mitochondria creating mitochondrial issues/dysfunction (in my case lactic acidosis, exercise intolerance) this mito damage then creates autoimmune disorders/dysfunction (in my case...fibromyalgia, osteoarthiritis, osteporosis, peripheral neuropathy, allergies, and much more etc)

The diseases co-existing with your PP may be an indication of the advancement of the damage to your mitochondria and autoimmune system...I have used this information to create a method for diagnosing PP which includes the degree of progression or ‘level’, and the ‘stage’ to which it has developed.

From the "Periodic Paralysis Guide and Workbook"......

The Instructions (for the new chart):

The Number of Years Without a Diagnosis?

Age at diagnosis minus the age at the sign of the first symptom

Episodes of Paralysis or Muscle weakness?
Yes or No

Andersen-Tawil Syndrome Characteristics?
Yes or No

Form of Periodic Paralysis?

Based on Symptoms and Characteristics

Co-existing Conditions?

List and count then check the types: Autoimmune, Mitochondrial, Auto inflammatory or ?

Degree or Level of Progression?

Permanent muscle weakness? Exercise Intolerance? Permanent heart damage? Breathing muscle weakness? Other permanent Issues?

Check and count

Stage of Periodic Paralysis?
Stage One=periods of muscle weakness, or partial or full-body paralysis.
Stage Two=periods of muscle weakness, or partial or full-body paralysis and PP+ 1-10 (or more)
Stage Three= periods of muscle weakness, or partial or full-body paralysis and PP+ 1-10 (or more) and Autoimmune Dysfunction
Stage Four=periods of muscle weakness, or partial or full-body paralysis and PP+ 1-10 (or more) and Mitochondrial Dysfunction
Stage Five=periods of muscle weakness, or partial or full-body paralysis and PP+ 1-10 (or more) and Mitochondrial Dysfunction and Autoimmune Dysfunction

This formula is very clear to understand. It is a sensible, practical and a more reliable way to diagnose Periodic Paralysis.

Here is a list of Autoimmune Diseases/Disorders/Dysfunction and Mitochondrial Diseases/Disorders/Dysfunction

From the "Periodic Paralysis Guide and Workbook":

Have you been diagnosed with allergies, autoimmune and/or inflammatory diseases?
all related to autoimmune dysfunction

ALLERGIES, AUTOIMMUNE & INFLAMMATORY DISEASES
(All Autoimmune)

AUTOIMMUNE DISEASES
Addison's disease
Alopecia areata
Ankylosing spondylitis
Autoimmune angioedema
Autoimmune aplastic anemia
Autoimmune dysautonomia
Autoimmune hepatitis
Autoimmune hyperlipidemia
Autoimmune immunodeficiency
Autoimmune inner ear disease
Autoimmune myocarditis
Autoimmune oophoritis
Autoimmune pancreatitis
Autoimmune retinopathy
Autoimmune thrombocytopenic purpura
Autoimmune thyroid disease
Autoimmune urticaria
Axonal & neuronal neuropathies
Behcet’s disease
Cardiomyopathy
Celiac disease
Chronic fatigue syndrome
Chronic inflammatory demyelinating
Polyneuropathy
Chronic recurrent multifocal ostomyelitis
Crohn’s disease
Congenital heart block
CREST disease
Demyelinating neuropathies
Dermatomyositis
Discoid lupus
Dressler’s syndrome
Endometriosis
Fibromyalgia
Glomerulonephritis
Goodpasture’s syndrome
Graves' disease
Guillain-Barre syndrome
Hashimoto's encephalitis
Hashimoto’s thyroiditis
Hemolytic anemia
Immunoregulatory lipoproteins
Inclusion body myositis
Interstitial cystitis
Juvenile arthritis
Juvenile diabetes (Type 1 diabetes)
Juvenile myositis
Kawasaki syndrome
Lambert-Eaton syndrome
Lichen planus
Lichen sclerosus
Lupus
Lyme disease, chronic
Meniere’s disease
Mixed connective tissue disease
Multiple sclerosis
Myasthenia gravis
Myositis
Narcolepsy
Neutropenia
Optic neuritis
Peripheral neuropathy
Pernicious anemia
Polymyalgia rheumatica
Polymyositis
Progesterone dermatitis
Primary biliary cirrhosis
Psoriasis
Psoriatic arthritis
Idiopathic pulmonary fibrosis
Raynauds phenomenon
Reactive Arthritis
Reflex sympathetic dystrophy
Reiter’s syndrome
Relapsing polychondritis
Restless legs syndrome
Rheumatic fever
Rheumatoid arthritis
Sarcoidosis
Scleroderma
Sjogren's syndrome
Stiff person syndrome
Subacute bacterial endocarditis
Type I diabetes
Ulcerative colitis
Undifferentiated connective tissue dis.
Vasculitis

INFLAMMATORY DISEASES
ALS
Addison's disease
Aging (senescence)
Allergies and sensitivities
Anemia
Ankylosing spondylitis
Anorexia and bulimia
Anxiety
Asthma
Autism spectrum disorder
Baldness (alopecia)
Bipolar Disorder (manic-depression)
Cancer
Cardiovascular diseases
Cat scratch fever
Celiac disease
Chronic Lyme disease
Chronic fatigue syndrome
Co-infections
Cognitive dysfunction (brain fog)
Depression
Diabetes, Type II
Epilepsy (seizures)
Eye diseases
Fibromyalgia
Graves' disease
Hashimoto's disease
Headaches and migraines
Hypercalcemia
Hypertension (high blood pressure)
Inflammatory bowel disease (Crohn's disease and ulcerative colitis)
Irritable bowel
Kidney disease
Kidney stones
Learning disabilities (ADHD, ADD, dyslexia)
Mental and neurological conditions
Multiple chemical sensitivity
Multiple sclerosis
Obesity
Obsessive-compulsive disorder
Osteoarthritis
Osteoporosis and osteopenia
Parkinson's disease
Periodontal disease and gingivitis
Peripheral neuropathy
Pernicious anemia
Psoriasis
Raynaud's syndrome
Reiter's syndrome
Restless leg syndrome
Rheumatoid arthritis
Sarcoidosis
Schizophrenia
Scleroderma
Secondary hyperparathyroidism
Systemic lupus erythematosus
Cystic fibrosis
Diabetes, Type I
HIV and AIDS
Rickets

MITOCHONDRIAL DISEASES
Alzheimer's Disease
Parkinson’s' Disease
Ataxia, myoclonus and deafness
chronic intestinal pseudo obstruction with myopathy and ophthalmoplegia
Chronic Progressive External ophthalmoplegia
Cyclic Vomiting Syndrome
Maternally inherited deafness or Aminoglycoside-induced deafness
Dementia and chorea
Diabetes mellitus and deafness
Exercise intolerance
Epilepsy, strokes, optic atrophy and cognitive decline
Familial bilateral striatal necrosis
Fatal Infantile cardiomyopathy plus, a MELAS-associated cardiomyopathy
Gastrointestinal reflux
Kearns Sayre Syndrome
Leber's Hereditary Optic Neuropathy and Dystonia
Leber Hereditary Optic Neuropathy
Lethal Infantile Mitochondrial Myopathy
Myopathy and Diabetes Mellitus
Mitochondrial Encephalomyopathy, Lactic acidosis and stroke-like episodes
Myoclonic epilepsy and psychomotor regression
Myoclonic epilepsy and ragged red muscle fibers
Maternally inherited diabetes and deafness
Maternally Inherited hypertrophic cardiomyopathy
Maternally inherited cardiomyopathy
Maternally Inherited Leigh Syndrome
Mitochondrial encephalocardiomyopathy
Mitochondrial encephalomyopathy
Mitochondrial myopathy
Maternal myopathy and cardiomyopathy
Multisystem Mitochondrial Disorder
(myopathy, encephalopathy, blindness,
hearing loss, peripheral neuropathy)
Neurogenic muscle weakness, Ataxia, and Retinitis Pigmentosa; alternate
phenotype at this locus is reported as
Leigh Disease
Non-Insulin Dependent Diabetes Mellitus
Progressive Encephalopathy
Progressive Myoclonus Epilepsy
Rett Syndrome
Sudden Infant Death Syndrome
Sensorineural hearing loss

MITOCHONDRIAL DYSFUNCTION
Cancers (some)
Exercise intolerance
Strokes
Seizures
Gastrointestinal problems (reflux, vomiting, constipation, diarrhea)
Swallowing difficulties
Failure to thrive
Blindness
Deafness
Heart and kidney problems
Muscle failure
Heat/cold intolerance
Diabetes
Lactic acidosis
Immune system problems
Liver disease

I hope this is helpful to some of you....

More information is in the "The Periodic Paralysis Guide And Workbook"


PPNI Periodic Paralysis Diagnosis Chart